An important part of our mission at the ALS Association is to advocate for changes in laws and regulations that affect thousands of people living with ALS and their families. ALS advocacy has resulted in policies that not only advance the search for treatments and a cure, but has also helped to ensure that people living with ALS have access to the healthcare they need and deserve to maintain a higher quality of life. ALS advocates from around the country have been instrumental in passing legislation that expanded veteran’s benefits, increased national data collection through the ALS Registry, and improved insurance and disability coverage for people with ALS. More than $950 million in federal funding has been generated for ALS-specific research since 1998.
In a perfect world, everyone would have equal access to healthcare resources (let’s get real, in a perfect world, ALS doesn’t even exist). Until that time – when we live in a world without ALS – living with ALS in a rural community can be extra challenging. According to The National Rural Health Association here are just a few reasons why: